::I’m honored to publish this guest post by Mahala Howard. It needs no introduction.::
I have a genetic connective tissue disorder called Ehlers Danlos Syndrome. I’ve had some symptoms of this condition my whole life. In my youth, my symptoms were brushed off as being normal by my family and doctors. I was such a shy person, that I never pressed it further and lived under the assumption that I was just weaker than everyone else, and I needed to try harder. So I pushed on. I learned to work through the symptoms. And if they did stop me in my tracks, I hid that from others and took to solitude. Still, I was able to manage and did very well in high school and college with 4.0 GPAs.
At age 20, I took up a new hobby: I started skateboarding. When my ankles ached, I iced them. When the pain got worse, I braced them. When I was limping at work, I laughed it off and told everyone I just need to build up the strength, and I continued to skate. Until one summer day, I had an accident. Going down a rather steep hill, I hit a tree branch on the path and flew off my board head first into the air, hitting the front of my head, and back of my head on the pavement before my body skidded down the hill to a stop.
This left me with a fractured skull, a few subdural hematomas, a severe concussion, and left me to awake from my unconscious state to a whole new world of symptoms; throwing my body into a downward spiral. Two years later, several diagnosis, doctors, medications, treatments, a second TBI, and even a life-saving neurosurgery, and I’m not really any better overall than I was when I woke up more than two years ago.
Going from a 4.0 Junior in college double majoring in accounting and finance with a great internship, to waking up with often severe physical, mental, and cognitive symptoms, does tend to turn a gals world upside down. But the hardest aspect of becoming disabled at 20 years old, is not the symptoms themselves — although don’t get me wrong, dealing with all that is challenging enough. Still, the hardest part of disability for me, is dealing with other human beings, in addition to societal stigmas and expectations.
When I first had my Traumatic Brain Injury in 2016, everyone’s questions revolved around when I would be better, if I’m better yet, why I’m not better yet, when I’m returning to work or school, etc. Meanwhile I had days where I couldn’t even walk without running into the walls from such intense vertigo and room spinning. I would repeat entire hour long conversations to my mother just an hour or so later. I couldn’t keep up with the day, time, or schedule. I was sleeping 16 hour days. And people just didn’t understand why.
That lack of understanding has continued, diagnosis after diagnosis, explanation after explanation. It became obvious people didn’t really want to know how I was doing, they wanted me to say something positive so they could feel happier about it, and just get on with their day.
Illness creates such a big disconnect, especially illnesses that most people haven’t heard of. When you’re 20 in a competitive field, people have an even harder time understanding illness and disability. But really the age doesn’t matter. There are doctors that don’t understand your symptoms and situation. The general public, regardless of age, has the hardest time wrapping their heads around chronic illness.
No matter how much you explain, no matter how much you share, people are often not capable of understanding.
I woke up to a world that’s still very inaccessible. A world where my life is up for debate, the programs I survive on are threatened to be cut, SSDI/SSI is such a challenging demeaning process, pain medication is being taken away, health care is so unaffordable, my fellow patients are being treated badly for illnesses out of their control. My fellow patients are dying, and there’s little help in managing it all.
We get judged for not trying hard enough, doing enough, and are categorized as lazy. Or on the flip side, we are judged for our good days and told we are not disabled enough; Not disabled enough to park in a handicap space, for certain accommodations, for certain treatments or medical equipment, for staying home and not being in the work force. The list really goes on.
I grew up understanding that people will always judge you, but becoming disabled turns that judgement up several notches. Things are taken to a whole new level. Coping with memory loss, aphasia, problems focusing, fainting, vomiting, severe pain, brain fog, hearing loss, sensory loss, overstimulation, mental health issues, intense headaches, subluxations, and a head that doesn’t want to stay attached is hard enough. (I can happily say my skull is securely attached now.) Having your life flipped upside down and all your dreams presently out of reach is hard enough, but dealing with a society who doesn’t think your life, healthcare, and basic living needs are important, dealing with people who do not understand your illnesses and do not bother trying, being disbelieved, doubted, treated like your less than, is a whole separate can of worms.
Becoming sick and disabled is an extremely difficult adjustment that societal expectations makes a thousand times harder.
It doesn’t have to be this way. Abled- bodied individuals can help by being willing to learn, and at the very least, to listen. By researching the person’s conditions or asking appropriate questions, by taking the needs of people with disabilities into account when voting on an important issues, by making events that you’re a part of more accessible, by making restaurants, stores and other public places more accessible. And by validating and working to understand that person’s needs and their reality, even if it isn’t butterflies and rainbows for you.
The hardest part about becoming disabled at age 20, and probably becoming disabled in general, is the lack of support, understanding, inclusivity, and accessibility from everyone else.